Unmet supportive care needs of haematological cancer survivors: rural versus urban residents.

Due to fewer cancer services in rural locations, rural survivors may have unique unmet needs compared to urban survivors. This study compared among rural and urban haematological cancer survivors the most common "high/very high" unmet supportive care needs and the unmet need scores for five domains (information, financial concerns, access and continuity of care, relationships and emotional health). Survivors' socio-demographics, rurality, cancer history and psychological factors associated with each unmet need domain were also explored. A total of 1511 haematological cancer survivors were recruited from five Australian state cancer registries and 1417 (1145 urban, 272 rural) allowed extraction of their residential postcode from registry records. A questionnaire that contained the Survivor Unmet Needs Survey was mailed to survivors. Dealing with feeling tired was the most common "high/very high" unmet need for rural (15.2%) and urban (15.5%) survivors. The emotional health domain had the highest mean unmet need score for rural and urban survivors. Rurality was associated with a decreased unmet emotional health domain score whereas travelling for more than 1 h to treatment was associated with increased unmet financial concerns and unmet access and continuity of care. Depression, anxiety and stress were associated with increased unmet need scores for all five domains. Unmet need domain scores generally did not differ by rurality. Travelling for more than 1 h to treatment was associated with increased unmet need scores on two domains. Telemedicine and increased financial assistance with travel and accommodation may help those travelling long distances for treatment.

Psychological morbidity among Australian rural and urban support persons of haematological cancer survivors: Results of a national study.

OBJECTIVE: To compare the prevalence of anxiety, depression, and stress among rural and urban support persons of haematological cancer survivors and explore factors associated with having one or more of these outcomes. METHODS: Haematological cancer survivors were identified via 1 of 5 state-based cancer registries and invited to take part in a survey. Those who agreed were asked to pass on a questionnaire package to their support person. Measures included the Depression, Anxiety, and Stress Scale, Support Persons' Unmet Need Survey, and sociodemographic questions. RESULTS: Nine-hundred and eighty-nine (66%) participating survivors had a participating support person. There were no significant differences in the proportion of urban versus rural support persons who reported elevated levels of depression (21% vs 23%), anxiety (16% vs 17%), or stress (16% vs 20%), P > .05. Odds of reporting at least 1 indicator of psychological morbidity increased by 10% to 17% for each additional high or very high unmet need and by 2% for those who had relocated from their usual place of residence for the survivor to receive treatment and was decreased by 5% to 54% for those support persons who reported that they had no chronic health conditions. CONCLUSIONS: Psychological outcomes for rural and urban support persons are similar. Those who have poor health, have had to relocate, and who have multiple unmet needs are particularly vulnerable to poor psychological outcomes. These factors should be assessed to enable early intervention for those at risk of poor outcomes.

Impact of Canadian tobacco packaging policy on use of a toll-free quit-smoking line: an interrupted time-series analysis.

BACKGROUND: A policy for new pictorial health warning labels on tobacco packaging was introduced by Health Canada in 2012. The labels included, for the first time, a prominently displayed toll-free number for a quit-smoking line. We used data from the Ontario provincial quitline to investigate the call volume and number of new callers receiving treatment in the months before and after the new policy was introduced. METHODS: We used an interrupted time-series analysis to examine trends in the overall call volume and number of new callers receiving treatment (≥ 1 telephone counselling session) through Ontario's quitline (Smokers' Helpline) between January 2010 and December 2013. We analyzed data using Box-Jenkins autoregressive integrated moving-average models; we adjusted the models for a major campaign promoting the quitline, a seasonality (January) effect and tobacco pricing. RESULTS: We found a relative increase of 160% in the average monthly call volume during the 7 months after the introduction of the new labels (870 calls per month at baseline and 1391 additional calls per month on average after the policy change; standard error [SE] 108.94, p < 0.001), and a sustained increase of 43% in subsequent months. We observed a relative increase of 174% in the number of new callers receiving treatment (153 new callers per month at baseline and 267 additional new callers per month after the policy change; SE 40.03, p < 0.001) and a sustained increase of 80% in subsequent months. The effect was significant even after controlling for a major promotion campaign and the January effect. INTERPRETATION: We found a significant increase in the monthly overall call volume and number of new callers receiving treatment per month after the introduction of the new tobacco health warning labels, with a sustained increase in overall calls and new callers beyond the first 7 months. Our findings add to the body of evidence on the benefit of including a toll-free quitline number on tobacco packaging.

Prevalence and associates of psychological distress in haematological cancer survivors.

PURPOSE: To explore outcomes of psychological distress, including anxiety, depression and stress, amongst adult haematological cancer survivors, with a specific focus on potential differences between rural and urban survivors. METHODS: One thousand four hundred fourteen urban and rural survivors were recruited from five Australian population-based cancer registries and completed a self-report pen-and-paper survey on their well-being, including the Depression Anxiety and Stress Scale 21-item version. RESULTS: A quarter of survivors were identified as reporting above normal levels of anxiety and depression, respectively, and almost one fifth (17 %) reported above normal levels of stress. There were no statistically significant differences in the percentage of rural and urban survivors reporting above normal levels of anxiety, depression, or stress. Survivors who had experienced financial burden due to their cancer or were of middle age had higher odds of reporting multiple domains of psychological distress, compared to their counterparts. CONCLUSIONS: Haematological cancer survivors diagnosed during middle age or who experience increased financial burden as a result of their diagnosis may require additional support and care with regards to psychological distress.

Impact of Canadian tobacco packaging policy on quitline reach and reach equity.

OBJECTIVE: To examine the impact of the new Canadian tobacco package warning labels with a quitline toll-free phone number for seven provincial quitlines, focusing on treatment reach and reach equity in selected vulnerable groups. METHODS: A quasi-experimental design assessed changes in new incoming caller characteristics, treatment reach for selected vulnerable sub-populations and the extent to which this reach is equitable, before and after the introduction of the labels in June, 2012. Administrative call data on smokers were collected at intake. Pre- and post-label treatment reach and reach equity differences were analysed by comparing the natural logarithms of the reach and reach equity statistics. RESULTS: During the six months following the introduction of the new warning labels, 86.4% of incoming new callers indicated seeing the quitline number on the labels. Treatment reach for the six-month period significantly improved compared to the same six-month period the year before from .042% to .114% (p<.0001) and reach equity significantly improved for young males (p<.0001) and those with high school education or less (p=.004). CONCLUSIONS: The introduction of the new tobacco warning labels with a quitline toll-free number in Canada was associated with an increase in treatment reach. The toll-free number on tobacco warning labels aided in reducing tobacco related inequalities, such as improved reach equity for young males and those with high school or less education.

Measurement invariance of English and French Health Education Impact Questionnaire (heiQ) empowerment scales validated for cancer.

PURPOSE: If measurement invariance (MI) is demonstrated for a scale completed by respondents from two different language groups, it means that the scale measures the same construct in the same way in both groups. We assessed MI of the French- and English-language versions of the five Health Education Impact Questionnaire (heiQ) empowerment scales validated for the cancer setting. METHODS: Data came from two cross-sectional studies of Canadian cancer survivors (704 English, 520 French). Single-group confirmatory factor analysis (CFA) was used to test whether the hypothesized factor structure of the French-language heiQ empowerment scales fit the data. Multi-group CFAs were conducted to assess different levels of MI conditions (configural, metric, scalar, strict, as well as MI of factor variances, covariances, and latent means) of the French- and English-language heiQ empowerment scales. RESULTS: The correlated five-factor model showed good fit in both language groups (goodness-of-fit indices: CFI ≥ .97; RMSEA ≤ .07). Goodness-of-fit indices and tests of differences in fit between models supported MI of the five-factor model across the two language groups (∆CFI ≤ -.010 combined with ∆RMSEA ≤ .015). CONCLUSIONS: The French- and English-language heiQ empowerment scales measure the same five dimensions of empowerment in the same way across both language groups. Thus, any observed similarities or differences between French- and English-speaking respondents completing these scales are valid and reflect similarities or differences in empowerment across language groups, not measurement artifact. Consequently, heiQ empowerment data from English- and French-speaking respondents can be directly pooled or contrasted in data analyses.

Indicators for evaluating cancer organizations' support services: performance and associations with empowerment.

BACKGROUND: Community-based cancer organizations provide services to support patients. An anticipated benefit of these services is patient empowerment. However, this outcome has not been evaluated because of the lack of validated health-related empowerment questionnaires in the cancer context. In this validation study, the authors assessed the extent to which 16 indicators used by the Canadian Cancer Society (CCS) and the Cancer Council Victoria, Australia (CCV) to evaluate their services were associated with health-related empowerment. METHODS: Cancer patients/survivors who were diagnosed < 3 years earlier and who used CCS programs completed a questionnaire that included the 16 CCS-CCV indicators and 5 scales from the Health Education Impact Questionnaire (heiQ) measuring key dimensions of empowerment. To determine whether the CCS-CCV indicators captured empowerment, differences in heiQ scores were compared between 2 groups: those with higher levels of agreement (agreeing or agreeing strongly) with an indicator and those with lower levels of agreement (agreeing slightly or disagreeing to any degree). RESULTS: Participation was 72% (207 of 289 eligible CCS users). Compared with participants who had lower levels of agreement on CCS-CCV indicators, those who had higher levels of agreement were more likely to report higher levels of empowerment on the different heiQ scales. For 15 of 16 indicators, these differences were significant (Wilcoxon rank-sum test; P < .10) on ≥ 1 of 5 heiQ scales and for 10 of 16 indicators on ≥ 3 of 5 heiQ scales. Two indicators were associated significantly with all 5 heiQ scales (cope better and feel more in control). CONCLUSIONS: Using CCS-CCV indicators to evaluate community-based cancer organizations' services will help determine whether these services are reaching one of their important goals: namely empowering patients.

Health-related empowerment in cancer: validity of scales from the Health Education Impact Questionnaire.

BACKGROUND: Empowerment refers to an individual's feelings of being able to manage the challenges of the cancer experience and of having a sense of control over one's life. However, empowerment questionnaires that have been validated for the cancer setting are lacking. The objective of this study was to validate scales from the Health Education Impact Questionnaire (heiQ), which assesses the effects of health education programs among individuals with chronic conditions. The heiQ scales Social integration and support, Health service navigation, Constructive attitudes and approaches, Skill and technique acquisition, and Emotional distress were identified as key dimensions of empowerment for the cancer context. METHODS: Adults who were diagnosed with cancer < 3 years earlier were recruited from a population-based cancer registry and from the Canadian Cancer Society's information and peer-support programs. The 731 participants completed a mailed questionnaire, which included the heiQ scales, related constructs, and demographics. Reliability was assessed using Cronbach α values, and validity was determined using confirmatory factor analysis and scale correlations with related constructs (self-efficacy, intrusive thoughts about cancer, and mental and physical health). RESULTS: The hypothesized 5-factor model fit the data adequately (chi-square statistic, 528.17; degrees of freedom, 265; root mean square error of approximation, .04; non-normed fit index, .99; comparative fit index, 1.00; standardized root mean residual, .05). Factor loadings were high (23 of 25 were ≥ .70), and the factor correlations indicated separate but related constructs. Cronbach α values ranged from .75 to .90. A priori hypotheses about the correlations between heiQ scales and related constructs all were supported. CONCLUSIONS: The current results support the validity of these 5 heiQ scales as generic measures of health-related empowerment in the cancer setting. These scales could fill an important gap in the measures currently available to evaluate proximal effects of support interventions.

The reach ratio--a new indicator for comparing quitline reach into smoking subgroups.

INTRODUCTION: There is growing concern about population disparities in tobacco-related morbidity and mortality. This paper introduces the reach ratio as a complementary measure to reach for monitoring whether quitline interventions are reaching high risk groups of smokers proportionate to their prevalence in the population. METHODS: Data on smokers were collected at intake by 7 Canadian provincial quitlines from 2007 to 2009 and grouped to identify 4 high risk subgroups: males, young adults, heavy smokers, and those with low education. Provincial data are from the Canadian Tobacco Use Monitoring Survey. Reach ratios (ReRas), defined as the proportion of quitline callers from a subgroup divided by the proportion of the smoking population in the subgroup, and 95% confidence intervals were calculated for the subgroups. A ReRa of 1.0 indicates proportionate representation. RESULTS: ReRas for male smokers and young adults are consistently less than 1.0 across all provinces, indicating that a lower proportion of these high-risk smokers were receiving evidence-based smoking cessation treatment from quitlines. Those with high levels of tobacco addiction and less than high school education have ReRas greater than 1.0, indicating that a greater proportion of these smokers were receiving cessation treatments. CONCLUSION: ReRas complement other measures of reach and provide a standardized estimate of the extent to which subgroups of interest are benefiting from available cessation interventions. This information can help quitline operators, funders, and policymakers determine the need for promotional strategies targeted to high risk subgroups, and allocate resources to meet program and policy objectives.

Development and validation of the Short-Form Survivor Unmet Needs Survey (SF-SUNS).

PURPOSE: The Survivor Unmet Needs Survey (SUNS) is one of the only unmet needs measures that was developed and evaluated utilising a population-based sample of cancer survivors. At 89 items, the current scale is quite burdensome. The current study aimed to develop a valid and reliable short version of this survey. METHODS: A heterogeneous sample of 1,589 cancer survivors, aged 19 years or over at diagnosis, diagnosed with a histologically confirmed cancer in the previous 12 to 60 months, completed the SUNS. Using these data, we employed a combined theoretical and statistical method of reducing the number of items in the SUNS. The shortened survey was examined for construct validity, internal consistency, discriminant validity and floor and ceiling effects. RESULTS: Fifty-nine items were removed. Construct validity closely reflected the original structure of the SUNS. However, all items from the Emotional health and Relationships domains loaded onto one factor. Cronbach's alpha for the final four domains were 0.85 or above, demonstrating strong internal consistency. Intra-class correlations of the three domains from the original survey (Financial concerns, Information and Access and continuity of care) and shortened survey were high (>0.9). Discriminant validity illustrated the short-form SUNS' ability to discriminate between those who had recently received treatment and those who had not. CONCLUSIONS: This study describes the development and psychometric evaluation of the short-form SUNS (SF-SUNS). Future studies should confirm the test-retest reliability and predictive validity of the SF-SUNS utilising large, independent, population-based samples of cancer survivors.

Unmet needs of Australian and Canadian haematological cancer survivors: a cross-sectional international comparative study.

OBJECTIVE: Few population-based studies have assessed the needs of haematological cancer survivors or conducted international comparisons. We aimed to assess and compare the unmet needs of Australian and Canadian haematological cancer survivors. METHODS: Two cross-sectional datasets were analysed. Survivors were recruited from population-based cancer registries and sent a self-report survey containing the Survivors Unmet Needs Survey. Australians were aged 18-80 years at the time of study and diagnosed in the last 3 years. Canadians were diagnosed 1-5 years prior and aged 19 years and over at diagnosis. RESULTS: A total of 268 Australian and 169 Canadian survivors returned a completed survey. 'Dealing with feeling tired' was identified as the highest concern by survivors. Country (LRχ(2)=4.0(1), p=0.045) was associated with survivors reporting a 'high/very high' unmet need with 'worry about earning money,' with Australians reporting marginally nonsignificantly higher odds than Canadians (OR 2.1; 95% CI; 0.99, 4.3). Country was not significantly associated with any other outcome. Having a personal expense in the last month as a result of having cancer, younger age at diagnosis, female sex, vocational or other level education, and consulting a health care professional for cancer treatment or concerns about cancer in the last month were associated with multiple areas of need. CONCLUSIONS: Australian and Canadian haematological cancer survivors were found to experience similar levels of unmet needs. Overall, haematological cancer survivors may require additional assistance in dealing with feeling tired.

School and community predictors of smoking: a longitudinal study of Canadian high schools.

OBJECTIVES: We identified the most effective mix of school-based policies, programs, and regional environments associated with low school smoking rates in a cohort of Canadian high schools over time. METHODS: We collected a comprehensive set of student, school, and community data from a national cohort of 51 high schools in 2004 and 2007. Hierarchical linear modeling was used to predict school and community characteristics associated with school smoking prevalence. RESULTS: Between 2004 and 2007, smoking prevalence decreased from 13.3% to 10.7% in cohort schools. Predictors of lower school smoking prevalence included both school characteristics related to prevention programming and community characteristics, including higher cigarette prices, a greater proportion of immigrants, higher education levels, and lower median household income. CONCLUSIONS: Effective approaches to reduce adolescent smoking will require interventions that focus on multiple factors. In particular, prevention programming and high pricing for cigarettes sold near schools may contribute to lower school smoking rates, and these factors are amenable to change. A sustained focus on smoking prevention is needed to maintain low levels of adolescent smoking.

Adolescent smoking: effect of school and community characteristics.

BACKGROUND: A substantial challenge in addressing adolescent tobacco use is that smoking behaviors occur in complex environments that involve the school setting and larger community context. PURPOSE: This study provides an integrated description of factors from the school and community environment that affect youth smoking and explains variation in individual smoking behaviors both within and across schools/communities. METHODS: Data were collected from 82 randomly sampled secondary schools in five Canadian provinces (British Columbia, Manitoba, Ontario, Quebec, Newfoundland, and Labrador) during the 2003-2004 school year. Cross-sectional data were obtained from students; school administrators (school-based tobacco control policies and programs); and from observations in the community. In 2009, hierarchic logistic regression was used to model the role of individual, school, and community variables in predicting student smoking outcomes. RESULTS: Students who attended a school with a focus on tobacco prevention (OR=0.87, 95% CI=0.81, 0.94) and stronger policies prohibiting tobacco use (OR=0.92, 95% CI=0.88, 0.97) were less likely to smoke than students who attended a school without these characteristics. A student was more likely to smoke if a greater number of students smoked on the school periphery (OR=1.25, 95% CI=1.07, 1.47). Within the community, price per cigarette (OR=0.91, 95% CI=0.84, 0.99) and immigrants (OR=0.99, 95% CI=0.98, 0.99) were inversely related to students' smoking status. CONCLUSIONS: The results suggest that school and community characteristics account for variation in smoking levels across schools. Based on the current findings, the ideal school setting that supports low student smoking levels is located in a neighborhood where the cost of cigarettes is high, provides tobacco prevention education, and has a policy prohibiting smoking.

Psychometric properties of cancer survivors' unmet needs survey.

PURPOSE: This study aims to develop a psychometrically rigorous instrument to measure the unmet needs of adult cancer survivors who are 1 to 5 years post-cancer diagnosis. "Unmet needs" distinguishes between problems which survivors experience and problems which they desire help in managing. METHODS: The survey was developed from a comprehensive literature review, qualitative analysis of the six most important unmet needs of 71 cancer survivors, review of the domains and items by survivors and experts, cognitive interviews and a pilot test of 100 survivors. A stratified random sample of 550 cancer survivors, selected from a population-based Cancer Registry, completed a mailed survey to establish reliability and validity. RESULTS: The final 89-item Survivors Unmet Needs Survey (SUNS) has high acceptability, item test-retest reliability and internal consistency (Chronbach's alpha 0.990), face, content and construct validity. Five subscales measure Emotional Health needs (33 items, 19.4% of variance), Access and Continuity of Care (22 items, 15.1%), Relationships (15 items, 12.1%), Financial Concerns (11 items, 10.3%) and Information needs (eight items, 8.1% of the variance). CONCLUSIONS: This instrument has strong psychometric properties and is useful for determining the prevalence and predictors of cancer survivors' unmet needs across types of cancer, length of survivorship and socio-demographic characteristics. Use of the SUNS will enable more effective targeting of programmes and services and guide policy and health planning decisions. RELEVANCE: This study is an important step toward evidence-based planning and management of problems which the growing survivor population requires assistance in managing.

School smoking policy characteristics and individual perceptions of the school tobacco context: are they linked to students' smoking status?

The purpose of this study was to explore individual- and school-level policy characteristics on student smoking behavior using an ecological perspective. Participants were 24,213 (51% female) Grade 10-11 students from 81 schools in five Canadian provinces. Data were collected using student self-report surveys, written policies collected from schools, interviews with school administrators, and school property observations to assess multiple dimensions of the school tobacco policy. The multi-level modeling results revealed that the school a student attended was associated with his/her smoking behavior. Individual-level variables that were associated with student smoking included lower school connectedness, a greater number of family and friends who smoked, higher perceptions of student smoking prevalence, lower perceptions of student smoking frequency, and stronger perceptions of the school tobacco context. School-level variables associated with student smoking included weaker policy intention indicating prohibition and assistance to overcome tobacco addiction, weaker policy implementation involving strategies for enforcement, and a higher number of students smoking on school property. These findings suggest that the school environment is important to tobacco control strategies, and that various policy dimensions have unique relationships to student smoking. School tobacco policies should be part of a comprehensive approach to adolescent tobacco use.

The cancer support person's unmet needs survey: psychometric properties.

BACKGROUND: A rigorous psychometric methodology was used to develop a measure of unmet needs for cancer survivors' principal support persons. Principal support person was defined as "someone you can count on and who helps you with your needs." METHODS: Development of the domains and the items followed an extensive literature review, iterative input from support persons, and consultation with health professionals and front-line staff working with cancer survivors and their supports. Cognitive interviews helped clarify item wording, and the draft questionnaire was reappraised by a group of support persons. The questionnaire was reduced to 90 items and sent to a stratified, random sample of cancer survivors selected from a provincial population-based cancer registry. They were asked to give the survey to their support person. RESULTS: The resulting 78-item Support Person Unmet Needs Survey has high acceptability, item test-retest reliability, internal consistency (Chronbach alpha = .990), and face, content, and construct validity. It captures 6 domains of unmet needs and accounts for 73.5% of total variance: Information and Relationship Needs (27 items, 22.1% of variance), Emotional Needs (16 items, 15.2%), Personal Needs (14 items, 14.0%), Work and Finance (8 items, 8.8%), Health Care Access and Continuity (9 items, 8.6%), and Worries About Future (4 items, 4.8%). CONCLUSIONS: This instrument will be of use where there is an interest in examining the impact of cancer not only on cancer survivors but also on their identified principal support persons.

The imperative of strategic alignment across organizations: the experience of the Canadian Cancer Society's Centre for Behavioural Research and Program Evaluation.

The Canadian Cancer Society's Centre for Behavioural Research and Program Evaluation (CBRPE) is a national asset for building pan-Canadian capacity to support intervention studies that guide population-level policies and programs. This paper briefly describes CBRPE's experience in advancing this work in the field of prevention. The aim is to illuminate issues of central importance for advancing the goals of the Population Health Intervention Research Initiative for Canada. According to our experience, success in building the population intervention field will depend heavily on purposeful alignment across organizations to enable integration of research, evaluation, surveillance, policy and practice. CBRPE's capacity development roles include a) a catalytic role in shaping this aligned inter-organizational milieu and b) investing our resources in building tangible assets (teams, indicators, data systems) that contribute relevant capacities within this emerging milieu. Challenges in building capacity in this field are described.

Smoke-free spaces over time: a policy diffusion study of bylaw development in Alberta and Ontario, Canada.

Policy diffusion is a process whereby political bodies 'learn' policy solutions to public health problems by imitating policy from similar jurisdictions. This suggests that diffusion is a critical element in the policy development process, and that its role must be recognised in any examination of policy development. Yet, to date, no systematic work on the diffusion of smoke-free spaces bylaws has been reported. We examined the diffusion of municipal smoke-free bylaws over a 30-year period in the provinces of Alberta and Ontario, Canada, to begin to address this gap and to determine whether spatial patterns could be identified to help explain the nature of policy development. Bylaw adoption and change were analysed within local, regional, and provincial contexts. Geographical models of hierarchical and expansion diffusion in conjunction with the diffusion of innovations framework conceptually guided the analyses. Study findings contribute to a broader understanding of how and why health policies diffuse across time and place. Policy development can be a powerful mechanism for creating environments that support healthy decisions; hence, an understanding of policy diffusion is critical for those interested in policy interventions aimed at improving population health in any jurisdiction.

Measuring quality of life in cancer survivors: a methodological review of existing scales.

BACKGROUND: Studies examining quality of life (QoL) in cancer survivors have relied on instruments specific to the cancer patient population. METHOD: MEDLINE and PsycINFO were systematically searched to identify instruments and papers reporting the psychometric qualities of relevant instruments. Two reviewers undertook data extraction with respect to reliability, validity, predictive validity, responsiveness, acceptability, readability, cross cultural acceptability and feasibility. RESULTS: Forty-two instruments were identified. Most were either measures of general health-related QoL or developed for individuals in active treatment. Nine were developed specifically for cancer survivors. None met the rigorous psychometric standards set by the review. All established acceptable levels of validity, however, only one instrument (Quality of Life-Cancer Survivors) demonstrated adequate test-retest reliability. Acceptability, feasibility and predictive validity remain unexamined. Readability was examined in only two (Cancer Survivors' Unmet needs and Quality of Life in Adult Cancer Survivors (QLACS)). Only two instruments (QLACS and Impact of Cancer) have been developed with a wide range of cancer survivors. Generally, shorter-term cancer survivors (1-5 years) are underrepresented. CONCLUSION: There is a need for a psychometrically credible QoL instrument for cancer survivors who are 1-5 years post diagnosis.

Minimal dataset for quitlines: a best practice.

OBJECTIVES: This paper discusses the development of a minimal dataset (MDS) for tobacco cessation quitlines across North America. The goal was to create a standardised instrument and protocol that would allow for comparisons and pooling of data across quitlines for evaluation and research purposes. Principles of utilisation focused evaluation were followed to achieve consensus across diverse stakeholder groups in two countries. METHODS: The North American Quitline Consortium (NAQC) assembled a working group with representatives from quitline service providers, funders, evaluators and researchers from Canada and the United States. An extensive, iterative consultation process over two years led to consensus on the evaluation domains, indicators and specific items. Descriptive information on quitline service models, data collection protocols and methodological issues were addressed. RESULTS: The resulting minimal dataset (MDS) includes 15 items collected from eligible callers at intake and eight items collected from smokers participating in evaluation. Recommendations for selecting evaluation participants, length of follow-up and repeat callers were developed. Full MDS questions and technical documents are available on the NAQC website. CONCLUSION: Adoption and implementation of the MDS occurred in the majority of North American quitlines by the end of 2006. Key success factors included a focus on utility and feasibility, a commitment to meeting multiple and varied needs, sensitivity to situational factors and investment in working interactively with stakeholders. The creation and implementation of a MDS across two countries is an important "first" in tobacco control which will help speed the creation of practice based evidence and facilitate practice based research.